A place for members to request and respond to requests from women looking for a one-on-one mentor, or to connect with others living in similar geographic areas.

I'm very curious about all the Illinois ladies who are making this breast cancer journey or who have finished it. Where are you located? What's your diagnosis? Where are you in your treatment plan? How's it going for you?

I thought we might be surprised to find somebody right in our own back yard that could use some encouragement or company.

I'll start us out. I live in Bloomington. I was diagnosed in Nov. 2006 with IDC cancer, 1.4 cm. er-, pr+, her2-. Stage 1 but that horrid Grade 3. Had an excisional biopsy that came back without clear margins. Went to Peoria to an excellent breast surgeon. Had a lumpectomy with sentinel node biopsy. Nodes and margins were both clear. Now I'm headed for my first CMF chemo on Jan. 26th. I'm very nervous about the chemo, which I dread more than any other part of the journey, I think.

Hop on here and tell us about yourself. There may be some of us that are even close enough we could meet for an outing some time.

Here is good news to those to whom enthusiasm does not come naturally: It can be cultivated. At first, you must consciously put your eyes, your voice, your spirit--in a word, yourself--into your appreciation of people and events and things. Do this around your home, at your work, and in your social contacts, and you will be surprised at how quickly it will become second nature. You will find yourself living in a more gracious and enthusiastic world, for your enthusiasm will be reflected back to you from the people to whom you give it. -David Dunn

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

I think the purpose of life is to be useful, to be responsible, to be honorable, to be compassionate. It is, after all, to matter: to count, to stand for something, to have made some difference that you lived at all. - Leo Rosten

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

Hi- It has been a long time since I have posted here. I have been in remission, and so I did not feel that I needed the support. Well when I went to see my MO Dr. Merkel at Kellogg for a follow up in April, he asked me if I noticed any changes in my breasts since I saw him last. I said there was a change in the lump in my R breast, which he had attributed to scar tissue a few years ago. He spent quite a bit of time examining that breast, and he agreed that it had changed. He then looked to see when I had my last mammogram, and it had been almost 11 months. He ordered a mammogram and ultrasound, but I told him I was going to New Orleans in eight days. He said I could have it done when I got back. The problem is that he is at Evanston Hospital, and all of my mammograms have been done at St. Francis in Evanston. A friend of my sister in New Orleans told me that I should have it done at St. Francis. When I got back here, I called and left a message for his nurse who called me back. She told me that I could have the mammogram and ultrasound at St. Francis, even though Dr. Merkel is not on staff there. It took me 6 days to make an appointment. The radiologist did not see any thing worrisome in the mammogram, but wanted to have additional pictures taken. Moving on to the ultrasound, they did not mention anything, and so I thought I was in the clear. Two days later I got the results of the mammo and ultrasound in my spam. The mammo is rated birads 2, but in the ultrasound the radiologist noticed there was a lump in my R breast, but she cannot make out what it is, and so she recommends that I have a biopsy. It was rated birads 4.

Four days later my PCP called me up, and told me I needed to make an appointment with my surgeon at St. Francis so he can examine it, and schedule a biopsy. It took me 22 days to make an appointment to see him. I am seeing him this Thursday, and he only does biopsies on Wednesday morning, and so I am going to have to wait again for the biopsy. In the meantime Dr. Merkel's office never contacted me about the results of the ultrasound. When I did some research about birads 4, I found that there is about a 30% chance that the lump is cancer, but it is probably DCIS if it is.

Moving on, I wanted to tell people in the Chicago area, and particularly Sandy, that I found out that Lutheran General now has a breast cancer support group that meets the first Friday of the month at 2:00 pm at the cancer survivorship center. They are going to meet this Friday 6/7 at 2. I haven't figured out how to do links on Windows 10, but if you google breast cancer support group Lutheran General, it will come up, and allow you to register for the group. Hope this helps, Nancy

Peaches1, I,too, live in Evanston and my MO is Dr. Merkel. I’m upset that Dr. M’s off ice never contacted you after the ultrasound.Waiting is so impossible. He is always immediately responsive when I email through North Shore Connect, though I’ve only seen him once, will again, after going on anastrozole, in July.. Kellogg should definitely start a new BC support group. Best Luck Thursday . Hugs

Hi- I think part of my problem is that most of my doctors are at St. Francis including the person who did the lumpectomy, I decided to see an oncologist at Kellogg because I thought I would get more hand holding than I would at St. Francis. They only have two oncologists at St. Francis, and neither one of them specialize in breast cancer. While I was going through chemo at Kellogg, I was visited by a social worker every time I was there, and the first time a pharmacist was there to help me sort through my meds.

My Sister in New Orleans is an endocrinologist, and when I had questions about whether I could have the mammo at St. Francis. I told her that I could email Dr. Merkel and ask him about it, she told me do not email him, and call up his nurse when I got home. She hates it when patients email her. When I have a question, I have found that Dr. Merkel's nurse Bonnie is much more helpful than Dr. Merkel is, and 90% of the time she can answer my question herself. Dr, Merkel is really shy, and is a man of few words. My breast surgeon is the total opposite, and is warm and fuzzy. My Sister says that I should mention to Dr. Merkel the next time I see him in July all of the side effects I am having on the letrozole, but I don't know if switching to another AI is going to help any. I think they all cause muscle and joint pain. Thanks

No, no chemo and I had noticed that you did have it. The difference maybe my age,85, and also whether tumor was 1.9 - Stage 1 or 2.2 Stage 2. On re-excision, they removed 3mm of residual IDC, though the margins were clear. Dr. Merkel didn’t know, for sure, if this moved me up a stage or not, though the RO thought it didn’t. Confusing..I asked Dr. Merkel, when I met him in March, how to contact him and he said through Email at North Shore Connect. I try not to bother him, but I’ve never met Bonnie.. How do you contact her?

Hi I noticed after I posted that question about why you did not have chemo, what your age was, and I am sure that is why you did not have it. I was 66 when I went through chemo. Concerning Bonnie she is his nurse navigator at Evanston and also now at Highland Park. He is only in Evanston on Mondays, Thursdays and Fridays. The last time I saw him on April 15th, Bonnie was not there, and there was somebody else sitting where she normally does. When I got back from New Orleans and called up concerning having the mammogram and ultrasound at St. Francis, another nurse called me back, and so I don't know why she was not available. I call up the main switchboard at Kellogg 847-570-2112, and I say I am a patient of Dr. Merkel and that I have a question. Bonnie always calls me back within a few hours. She is much more talkative than Dr. Merkel is, and the only time she had to ask him a question was when I told her that I had to have a root canal, and she had to ask him how long I should wait before I have the zometa iv for my osteopenia. I had to wait three months before I had the zometa. I have to see Dr. Merkel again on July 22nd, and have another zometa iv, unless the biopsy is positive, in which case I will call him up and ask him what he wants me to do as far as treatment for the breast cancer.

Hi peaches1. So much for us to figure out, re logistics and how to find out what we need to know. On NorthShore Connect, there’s no way to send Bonnie a message, so thank you for telling me how to reach her. Dr. M is a man of a few words, and I have a friend who says he is unempathic. But I have another who says he’s kept her alive for 12 years with Stage IV and 3 doctor friends who say he is quie, but brilliant.

Peaches, hi. (BCO just ate my long 4-paragraph post, which was about knowing about the LG support group but being unable to attend on Fri., tooth stuff, & asking about Jazzfest*). Sorry to hear you're facing yet another biopsy and getting the runaround from Dr. Merkel. You can request to switch to another MO at Kellogg Evanston, and I really, really like mine, Teresa Law. Her RN is Carrie Peterson, and my nurse-navigator is Beth Weigel. You can also have your mammos transferred to Evanston as well--I had mine transferred from Nordstrom Old Orchard (run by Glenbrook at the time) back in 2005--both Evanston & Glenbrook are now part of the NorthShore system. Another NorthShore breast MO who is excellent is Elaine Wade.

80% of BIRADS4 biopsies turn out to be either benign or atypical rather than malignant.

*isn't it a coincidence that both our breast imaging & biopsies were postponed due to trips to NOLA?

Peaches and Chi - Elaine Wade, who I hear, is wonderful, is only at Glenbrook though, not at Evanston. I think Dr. M, totally knows his stufff, cares much about his patients, but is not a warm talker, though he has always been responsive to my questions. I’m not certain I know the difference between his RN and nurse navigator. Which is Bonnie

In no way can we so effectively hasten the dawning of the inner consciousness of another, as by showing forth the divinity within ourselves simply by the way we live. By example and not by precept. By living not by preaching. By doing not professing. -Ralph Waldo Trine

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

Dr. Merkel has a medical assistant and a RN Bonnie who is his nurse navigator at Evanston on Mondays, Thursdays, and Friday. He has a different RN at Glenbrook, and he used to have an even different one at HP, but I saw somewhere that Bonnie has taken over the HP spot too. He used to have the same medical assistant at all three locations. I am not sure if he does now or not, because I have not seen her the last couple of times I was there. I think Dr. Merkel totally knows breast cancer, but his people skills are lacking. I have much better luck communicating with Bonnie if I have a question. A few years ago, my PCP was upset that Dr. Merkel was not treating me for my osteopenia, and she offered to put me on fosamax, and I told her that they don't use fosamax at Kellogg and they used something administered by an IV. The next time I saw Dr. Merkel I asked him about the osteopenia, and he said he was going to put me on zometa, but I had to see my dentist first.

My Sister the endocrinologist is not really big on zometa because of the cost and the risk of jaw necrosis, and she did some research online, and sent it to me to show to him. She even asked an oncologist she knew, and he said that Fosamax was just fine, and I definitely needed to be on something. When I mentioned that to Dr. Merkel, he went online and printed something to show to my sister to prove that she was wrong, and that zometa was much more beneficial, and it was cheaper than prolia which he also thought was ok.

I am going to see Dr. Hyser tomorrow afternoon, and I assume he will make an appointment for a biopsy then. Before I go and see him, I am going to go to McDonald's. They are running a special offer tomorrow 6/6 from 2-5. If you bring in any foreign currency, you can get an item for free from their new international menu. There are five items to choose from.

Each moment is magical, precious and complete and will never exist again. We forget that now is the moment we are in, that the next one isn't guaranteed. And if we are blessed with another moment, any joy, creativity or wisdom it brings will ensue from the way we live in the present one. -Susan L. Taylor

Do we need to make a special effort to enjoy the beauty of the blue sky? Do we have to practice to be able to enjoy it? No, we just enjoy it. Each second, each minute of our lives can be like this. Wherever we are, any time, we have the capacity to enjoy the sunshine, the presence of each other, even the sensation of our breathing. We don't need to go to China to enjoy the blue sky. We don't have to travel into the future to enjoy our breathing. We can be in touch with these things right now. -Thich Nhat Hanh

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

I finally saw Dr. Hyser yesterday. He examined my breasts, and asked me where the lump was. He then went outside to look at the ultrasound again. He said it was not really evident to him that I needed the biopsy. He finally decided that he would do another ultrasound on 6/19, and if it looked to him like he should do a biopsy he would do one there on the spot, but there was a chance that I would not get a biopsy. He told me not to lose any sleep over this. It almost sounded like it was a non event to him.

I went to the support group at Lutheran General this afternoon, and there were only four of us there besides the two leaders. More people need to show up if they are going to continue the group. One person is stage 4, and she is trying to decide whether to aggressively treat this or not. It sounds like she was only given the option of having chemo with lots of side effects. I suggested she get a second opinion

Did some checking in the NS site, and indeed breast cancer is all Merkel does. His video profile seemed a bit distant, and he only broke through with some enthusiasm when discussing his academic medical training, He had been something of a “boy wonder.” Too bad Wade is all the way out in Glenbrook, which from as far east as we are is quite a schlep. But like Skokie, all parking, including valet, is free, Evanston dings me $4 for self-park and $7 for valet. (Kellogg is the same $4 for self & valet)

The moment of grace comes to us in the dynamics of any situation we walk into. It is an opportunity that God sews into the fabric of a routine situation. It is a chance to do something creative, something helpful, something healing, something that makes one unmarked spot in the world better off for our having been there. We catch it if we are people of discernment. -Lewis B. Smedes

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

Chi- Kellogg or rather RO gave us strips of chits to put on the parking ticket to bring cost to $2.00. I wonder if MO office has them too. Will ask in July. My PCP recommended Wade , his significant other, is her nurse, but same significant other goes to Merkel.

While I was going through chemo at Kellogg, I asked the social worker that visited me every time about this, and she says the reason they charge for parking is because the city of Evanston charges them a tax for parking. I don't understand this though, because St. Francis does not charge for parking. They must eat up the fee the city charges them. I had 33 does of radiation, and they gave me 33 vouchers for free parking. In the beginning I had to go there at 7:00am, and they don't start charging for parking until 7:45, and so I had some parking vouchers left, but the last time I tried to use one, they had changed to a different system, and so they were worthless.

Sometimes when I had to go for rads it took me less than 30 minutes, and so I did not get charged for parking. They never reimburse you for parking if you are going for chemo or a doctor's visit. On Saturday and Sunday at the main hospital lot though, parking is free.

There is a breast cancer oncologist at Kellogg that did her fellowship at University of Chicago, and now works out of Kellogg. I think she works out of Evanston and one other location. It might be Gurnee. If I had stage 4 cancer, I would have no problems going to Dr. Merkel. Apparently all of his stage 4 patients love him, because he is the only reason they are still alive. When I went through chemo he was also able to adjust it after the first visit, so the side effects were not as bad. He told me that I did better than average with chemo though.

People usually consider walking on water or in thin air a miracle. But I think the real miracle is not to walk either on water or in thin air, but to walk on earth. Every day we are engaged in a miracle which we don't even recognize: a blue sky, white clouds, green leaves, the black, curious eyes of a child--our own two eyes. All is a miracle. -Thich Nhat Hanh

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

There is no difficulty that enough love will not conquer, no disease that enough love will not heal; no door that enough love will not open; no gulf that enough love will not bridge; no wall that enough love will not throw down; no sin that enough love will not redeem. . . . It makes no difference how deeply seated may be the trouble; how hopeless the outlook; how muddled the tangle; how great the mistake. A sufficient realization of love will dissolve it all. If only you could love enough you would be the happiest and most powerful being in the world. -Emmet Fox

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

Begin and end each day with an expression of gratitude and thanksgiving. Every morning when you awake you have been given the gift of a sunrise and twenty-four hours to live. This is a precious gift. You have the wonderful opportunity to take this day and live joyously, with appreciation for everything that you encounter. Take a deep breath and be grateful for this exhilarating experience of breathing in life and love. Similarly, end your day with an expression of love, and a repetition of the word for peace, "Shalom." -Wayne Dyer

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

Appreciation is the oil that lubricates life and keeps your wheels turning easily and freely. Without appreciation, your wheels will still spin, but they are apt to become rusted with resentment and exhaustion. Since there is great truth in the well-known statement "We teach people how to treat us," you can start teaching others to shower you with appreciation by showering yourself first. Sue Patton Thoele

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

And when we come to think of it, goodness is uneventful. It does not flash, it glows. It is deep, quiet, and very simple. It passes not with oratory, it is commonly foreign to riches, nor does it often sit in the places of the mighty: but may be felt in the touch of a friendly hand or the look of a kindly eye. David Grayson

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

Yeah, I forgot about the discount coupons for parking at Kellogg for radiation treatments. I had two left over, which I used for my visits with Dr. Law and then that first (and only) Zometa infusion. I too was wondering about why St. Francis has free parking (just before my cancer was diagnosed, Bob was an in-patient there for medical and then surgical management of a bowel perforation--done at a SW suburban GI clinic--and shortly thereafter, hernia repair; and in Oct. 2017, a bowel obstruction--and I'd have spent an arm & a leg for parking otherwise) when Evanston & Kellogg don't, and why only the Radiation Oncology dept. at Kellogg gives out discount coupons,

Never forget that the purpose for which a we live is the improvement of ourselves, so that we may go out of this world having, in our great sphere or our small one, done some little good for our fellow creatures and labored a little to diminish the sin and sorrow that are in the world. -William E. Gladstone

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

Once you accept and rejoice in your authenticity, you begin to see things as YOU are. You begin to see the authentic self is the Soul made visible. Godspeed on your journey to wholeness. -Sarah Ban Breathnach

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

Mindfulness practice means that we commit fully in each moment to be present; inviting ourselves to interface with this moment in full awareness, with the intention to embody as best we can an orientation of calmness, mindfulness, and equanimity right here and right now. -Jon Kabat-Zinn

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-

Cherish your visions. Cherish your ideals. Cherish the music that stirs in your heart, the beauty that forms in your mind, the loveliness that drapes your purest thoughts, for out of them will grow all delightful conditions, all heavenly environment; of these, if you will but remain true to them, your world will at last be built. -James Allen

Each day I am thankful for nights that turned into mornings, friends that turned into family, dreams that turned into reality and likes that turned into love. ~~~Elizabeth Kuebler-Ross
Dx
9/27/2007, IDC, 5cm, Stage II, Grade 3, 0/3 nodes, ER+/PR-, HER2-